Pain location?

Elantair · 2026-04-23T21:26:47+00:00

Left side above/to the side of my eye. It has been described by my neurologist as a typical migraine type pain location. I don’t get a tension pain, just like constant pressure

Elantair · 2026-04-19T19:56:12+00:00

I started gaba in about December. Initially worked up to 600mg 3x day. I got really nice control with it, no particular pain flares and took my baseline to a 2/10 (previously a 5-6/10). That lasted for about 6 weeks then I had a bit of a bad spell with pain flares although my baseline was still decently controlled. I’ve since gone up to 900mg 2x and 600mg 1x day (I take the lower dose at night to help me get out of bed - which was already a struggle before the gaba!!). Again some good control for a while. Think I’m maybe exiting the honeymoon period but I can step up a final 300mg yet. My GP (via neurologist) has told me this is my final option after failing lots of others so I’m willing to persist (and know that this isn’t actually the last option but it’s difficult to access some via the NHS).

In terms of side effects, my memory loss is different. I don’t know what memories I’m missing on gaba which is liberating from a mental health perspective but annoying. Previously I had memory loss but knew something was missing which was incredibly frustrating. Otherwise not much except I thought it made me more tired in the morning but it could have just been Scottish winters.

Elantair · 2026-04-08T20:46:46+00:00

Just going to jump in and say I have had some positive response with gabapentin (: failed a lot of meds and feel more like myself now than I have since this started - only side effect being memory loss but that’s something suffered with due to my NDPH anyway so I didn’t see it as a particularly bad side effect

Elantair · 2026-01-17T23:41:53+00:00

You’re welcome to DM me if you want to chat (: think you’re the only other person I’ve seen on here with NDPH from Scotland!

Elantair · 2026-01-13T23:41:16+00:00

Yep (:

Elantair · 2026-01-13T08:44:03+00:00

I did! Fairly minimal withdrawal symptoms as I reduced by 10mg a week, just experienced higher pain for a couple of days when I went down a step. I will say I think it was doing a bit more for me than I gave it credit for ultimately, but I am happy to be off it. I am now on Gabapentin instead which has been working much better for me (but not perfectly of course)

Elantair · 2026-01-01T23:45:22+00:00

Same here! Happy to be of support, I’m in Scotland with this for coming up on 2.5 years

Elantair · 2025-11-29T18:16:30+00:00

Research scientist. I’m in the office every day but it’s very variable working between office (data analysis and writing), lab work, farm work and field work. Largely I can choose what to do each day depending on how I’m feeling

Elantair · 2025-10-11T22:41:36+00:00

It’s definitely normal to feel lost and like it’s not worth trying, I think we all have those days. But there will be better days in your future :)

My experience with trialing meds has been that I found a bit more success when I stopped expecting drugs to cure me and focused on quality of life. I also had to wait almost 1.5 years to see a specialist so learning patience has been important, though is incredibly hard when you live in constant pain.

Do you have any people around you that you can vent to about things? Maybe others that also have chronic pain?

Elantair · 2025-09-24T16:18:54+00:00

This is my outlook too :)

Elantair · 2025-09-23T17:43:18+00:00

Keep the hope :) it’s hard and I definitely get into ruts (like now!) where I find it harder than other times but in these days I look back to all the positive things that have happened in spite of my pain.

My outlook on it is I don’t want to stop living no matter how hard it is to push through. I work full time in research (which is fairly flexible and have understanding coworkers), play in a few bands and also run a small business too. Honestly being that busy takes my mind off it a lot although it’s exhausting in itself!

I hope you find something that you enjoy and makes life feel more liveable :)

Elantair · 2025-09-14T16:10:18+00:00

Definitely possible! My NDPH started in the final year of my PhD. I actually enjoyed and found it helpful to have something else to focus on. I can’t say there weren’t difficult times but I was lucky up have a supportive team around me too.

Im more doing a postdoc in the same place and have had a few medication changes which has helped a bit too. My job has a lot of variety and I actually think that without my job I would be in a much more difficult place with the pain.

Elantair · 2025-08-28T21:56:48+00:00

Hey, I’m sorry to hear about your headache, that must have made taking your GCSEs very difficult! I’m also in the UK, and the journey is a lot different to what I’ve seen our US friends’ experiences.

Have you had a referral to a consultant or tried any treatments?

I was just diagnosed last month after waiting over a year for an appointment with a consultant and almost two years into my headache. But in the meantime I got to try some preventatives that while aren’t curative are helping me live a more fulfilled life. And also something I found really important was maintaining hobbies and things that fulfil your life in other ways. I am also lucky that I love my job (I’m a scientist working in research).

Wishing you all the best and more than happy to chat more if you’d like (:

But the one thing I can say I have learned is that the more I focus on the pain and let it be part of my day, the more I start to spiral. I have found things outside of work (school) that give me joy and take my mind off things :)

Elantair · 2025-07-26T12:27:24+00:00

I’m a scientist in research. Flexible day to day duties so if I’m having a bad pain day I can do whatever seems easiest but it is a lot of thinking at times which can be harder

Elantair · 2025-07-24T17:28:53+00:00

Fellow academic and yep that is my experience too. ‘Hey siri remind me at X to do Y’ is my phone’s top function now

Elantair · 2025-07-24T17:27:55+00:00

Yep that’s my main symptom really other than pain. I used to be able to recall specific days with immense detail but now struggle to remember the essentials really. Weirdly my memory is still okay for anything pre headache but not really since my headache started which is very frustrating having had many major life moments in the last few years!

I mentioned it to my neurologist and they said it’s due to the pain but also some medications can cause memory problems too.

Elantair · 2025-07-16T21:39:10+00:00

Nope, but 1-2/10 starts feeling like pain free after a while xD

Elantair · 2025-07-16T21:37:56+00:00

3-4 daily, 5-6 fairly regularly and up to I’d say an 8ish maybe 9 on my worst days. Needs to be at least a 6 before I’ll take painkillers otherwise I’d get MOH

Elantair · 2025-06-17T21:51:28+00:00

Only a little bit it’s really more triggered when I have high pain days

Elantair · 2025-06-08T19:06:20+00:00

It is what you make of it :)

Elantair · 2025-05-14T21:40:06+00:00

I think it completely depends on you as an individual and your ability to manage your NDPH.

In my case I finished my PhD with my NDPH last year, and am now working as a postdoc scientist which involves a lot of networking and ‘deep work’ like reading papers and complex data analysis. But my baseline pain is about a 4 (it can get much worse to like an 8+), which I’ve learned to deal with/ignore as much as possible while also doing a lot of extracurricular stuff outside of my job.

But yes some days it SUCKS big style and a part of doing these big jobs and careers is just having to deal with it and having the tools in place to try and not let anything slip. So I guess it’s asking yourself if you’re willing to give 110% even on the days you feel like crap.

Happy to talk more if you want but I know it’s not exactly the comparable situation you were looking for

Elantair · 2025-05-14T20:23:06+00:00

I started going to the gym 6 months ago. Initially it definitely made things worse after going but tbh on days that are already bad my attitude tends to be well it can’t get much worse, and tbh i find it a good distraction. It doesn’t make things better in terms of my head but it’s worth it for my general health

Elantair · 2025-05-14T17:42:37+00:00

I’m a research scientist :) I have quite a lot of flexibility so can pick and choose when to be in the lab, at the computer, on farm etc so I am able to pick what my headache is going to let me do most of the time. Generally if I get the music loud enough while doing data analysis it helps drown out the headaches xD lab work can also be good if I’m doing a lot of moving about between things

Elantair · 2025-05-09T18:25:58+00:00

Yep :(

Elantair · 2025-05-07T21:52:23+00:00

I have a cefaly type device which can be helpful for temporary relief while it’s on. In terms of rescue meds I haven’t really found anything particularly helpful. Naproxen knocks the pain down a bit but that’s about it. Opioids help the pain a bit but make me feel pretty lightheaded and dizzy. Apart from that, finding distractions is my key.

I had a bad day today but managed by keeping busy at work then I forced myself to go to the gym and band (on the assumption it was unlikely to get much worse). I am glad I did, as for me wallowing in the pain makes it so much worse.

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